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Ascribed and Chosen Identities in Chronic Illness

I haven’t blogged since January, so first an update. I did get over that bout of sick on Sick but had about a month of being stuck upstairs because my legs weren’t obeying my brain. This seemed to be fairly specific to my legs rather than my general health, I’m doing relatively okay cognitively. A neurology follow up appointment is in the offing.

Much more positively, I have “returned to work” after 5 years! This returning doesn’t actually involve going anywhere, I can work in bed if needs be. It’s a very part time contract on a new chronic illness research project with Catherine Hale and the Centre for Welfare Reform. You will hear much more about this soon, including how you can get involved.

Identity Ripples

To do with starting this work, my “rest” mind wanderings have been frequently landing on thoughts about chronic illness identity. I’m particularly curious about how far the ripples from chronic illness affect seemingly unrelated aspects of our lives.

I was listening to a new Brexit theory about Somewheres and Anywheres by David Goodhart. When I heard this particular description of Somewheres I thought it fitted me more than you’d expect (apart from political views such as Brexit, so the theory might be wrong!). Somewheres’ identity is rooted in a place, whereas Anywheres move around and don’t find identity in their local community. On the Political Compass I’m Left Libertarian and I’m university educated, from my background and people I know I should be a clear Anywhere.

Then he said that Anywheres are people who form their sense of identity around what they do professionally and what they’ve achieved. Somewheres have identities which are more ascribed to them (such as considering where they happened to be born as an important part of their identity).

I thought this was interesting in terms of being a Spoonie/ having chronic illness. If you feel unable to achieve identities like the Anywheres do, it makes sense that your identification with place becomes more pronounced. For those of us who spend large amounts of time housebound, we only exist in a very specific place. Having supportive neighbours is important to me both emotionally and practically. I would lose something tangible if I had to move. I also haven’t moved for work because I haven’t been well enough (my neurology appointment is in the hospital I was born in).

Probably if the reason you are a Somewhere is Spoonie related it wouldn’t affect Brexit views because that would be related to a sense of threat about freedom of movement and low wages (whereas Spoonie barriers to employment or quality of life are quite different).

On the other hand, we exist more in the global community online. We may be physically extremely rooted, but form meaningful relationships in cyberspace, more than is typical for healthies.

Vogue from 1957

I’ve been experimenting with modern pinup style. This is definitely a fashion niche and one I’ve picked up online. For a long time I’ve had a sense that I would find my sense of style by the time I’m middle aged. Before ME I was a bit too shy to experiment with looks. This actually means I have fewer embarrassing pictures, but I also feel regret. For the last 19 years with ME, money or energy has been too tight for this to be a priority. Now we’re more comfortably off, for the first time I’m buying clothes for a specific overall look, rather than something cheap to replace something that has worn out.

In this instance chronic illness gives me some space to experiment. I’m still quite self conscious as a person, so I would be cautious about suddenly reinventing myself if I was going out to work. I’ve been following people’s pins on Pinterest, working out Instagram (@jly_vintage_glamour) and reading blogs about it. This brings me to my next observation about identity ripples:

When I’ve been reading modern pinup blogs a few of them mention they have ME. I haven’t read that many blogs so this is surprising. Under 1% of the population have ME and I would guess something similar wear modern pinup clothes. Is there a connection?

Jessica Out of the Closet appears to have a younger, prettier version of my life (like me ME/CFS, POTS, small dog, married a woman in a Quaker Meeting House in Bristol) and I’m currently enthusiastically watching her videos and exclaiming “me too!”. She explains it:

“The way we look isn’t just important in terms of our own identity, it also impacts on how others see us. I continued to curl my hair whilst I was living in hospital- even when I barely had energy to read. Or eat.

Priorities.

It was not only a refusal to give up on who I am (technically a girl with straight hair but that’s never felt very ‘me’!) but a realisation that taking care of one’s outside also affects the way people treat you. Although before becoming ill I liked vintage fashion and bright colours, they took on a special meaning for me afterwards. I didn’t have to be the girl people stared at when she walked in because she was shuffling or had to be helped. Instead I could be the girl in the beautiful dress with a fancy headband- so they didn’t even notice those other things!

When you’re in a wheelchair, or walking with a stick or looking slightly like a fool because you can’t hear what on earth’s going on and all you have left is the blank smile- people are going to look at you anyway. You might as well give them something to look at. Something that is your choice.”

I think she’s onto something about the sense of control. If I wear a Viva Frida skirt with a 50s petticoat and bright red lipstick I know you will comment on this when you see me, rather than asking straight away about my health or saying “but you don’t look ill” (when the person in my pre-makeup mirror does look ill). It isn’t necessarily even about me feeling that I do look good. It is something for them to look at, controlling their gaze. Yesterday I did this with new people. For about an hour I passed as healthy. Then I felt faint sitting up, had to lie down and my partner had to explain that I was ill. It was good for that time though to actively construct my identity rather than having it ascribed to me.

16 thoughts on “Ascribed and Chosen Identities in Chronic Illness”

Interesting read. I think it also applies for any general personal types. For e.g. the common Myers-Briggs – my type as well as the behaviours within it have all been greatly influenced by chronic illness.

I’ve become more introvert and more emotionally stable with ME compared to before.
A lot of chronic conditions probably lean you towards being more introvert. I’m not sure if this is genuine personality change or more of a repercussion of symptoms. It must change us though.

ME has been shown to be associated with more connectivity in the brain (more areas lighting up on the same task). Just this week new research has post exertional malaise with lower activity in the frontal lobe (decision making, thought inhibition). Pure speculation but I wonder if this combination increases creativity?

Reduced risk taking is definitely a thing for me too because the negative feedback from risks is so much more frequent.

I loved that the idea of dressing up is in controlling others’ gaze. It’s true that we sometimes can’t help that people stare. That we can shift their gaze to our amazing sense of style is empowering. 😉

Dressing up definitely controls the gaze of people in my experience, but I think ME has changed my personality too. I am definitely more introverted and emotionally stable than I was, but this could be to do with energy conservation or it might just be an acceptance of who I now am and learning not to get hung up over every little thing. Equally, I suspect most people are calmer with age.

Interesting topic! Using hobbies or appearance to maintain some control over one’s identity is a common theme in spoonie IG accounts and blogs. It fascinates me that there are websites and FB groups dedicated to doing makeup while chronically ill. I guess when you lose so much control over your body you find ways to assert yourself, whether it be through make up, pin up clothing, tattoos or some other subculture.

For me, this assertion expressed itself as keeping my hair trimmed, bleached and dyed a variety of different shades, then eventually shaving it all off in a big FU to my body. I still like to dress up and wear lippie and accessories when I go out, not because I want to pass as healthy to others, but because it gives me a sense of normality which is sorely lacking in my life.